Answers; Some Good and Some Not So Good, but Livable

We heard from the neurosurgeons office. Relief!

I do still have a brain tumor. The tumor is a residual tumor that has been hiding and is stable. It was missed at my 1 month follow-up scan by the nurse practitioner. My neurosurgeon has been tracking it. (Communication people!) He is satisfied that it is stable, not growing, and no surgery is indicated at this time. We do not need a biopsy. Because it is a left over portion, we don't need to fear cancerous regrowth because it is not new growth.

The tissue used to close my craniectomy is something called DuraGen. It is more dense and can incorporate itself into the surrounding tissue, unlike DuraSeal. There is no reconstructive surgery needed. It is not as strong as my skull bone would have been, but it is sufficient for most daily activities. Again, clear and appropriate communication would have helped to decrease huge amounts of anxiety.

Referral to a neuropsychologist will follow with attention being given to my apparent lack of progress in some areas, as well as a provider more able to answer functional questions and concerns.

In summary: No surgery at this time or the forseeable future. Communication would have helped to clear up a lot of our concerns. Needless to say, I will not be seeing the supporting nurse practitioner from my first visits again. All of my case information has been transferred to S, and she will now conference directly with my neurosurgeon. If you wondered, the doctor has been made very aware of the concerns created from lack of communication and professionalism of his last provider. Now, off to write a very appreciative "Thank you" for the answers we received as well as the referral for support.

DuraGen

The DuraGen XS(TM) dural graft is the latest generation in Integra's line of duraplasty materials based on Integra's market leading absorbable collagen matrix technology. Integra launched DuraGen(R) Dural Graft Matrix, the first onlay collagen graft for dural repair, in 1999. This was followed by the launch of DuraGen Plus(R) Dural Regeneration Matrix in 2003. Subsequently, Suturable DuraGen(TM) Dural Regeneration Matrix was brought to market in 2005. Following the 1999 introduction of DuraGen(R), the Integra family of duraplasty materials rapidly became the standard of care for sutureless closure of dural defects in the U.S.A.
"The introduction of DuraGen XS(TM) Dural Regeneration Matrix demonstrates Integra's sustained commitment to providing the neurosurgical community with innovative technology and materials for the management of dural defects. DuraGen XS(TM) has a higher collagen content while maintaining the same porous structure found in our DuraGen Plus(R) materials. The resulting graft is stronger and more robust," said Mark Spilker, Ph.D., Integra's Vice President of Research and Development.
Based on available procedural data, Integra estimates that DuraGen XS(TM) and other DuraGen(R) dural grafts have the potential to be used in over 225,000 neurosurgical procedures annually in the U.S.
The dura mater is a tough, fibrous membrane that surrounds and protects the tissues of the brain and spinal cord. Head and spinal injuries often result in laceration of the dura mater and neurosurgical procedures require the opening or removal of the dura mater to gain access to the delicate tissues contained within. In both cases, effective dural closure is imperative to prevent cerebrospinal fluid leaks and facilitate wound healing. Dural defects may be repaired with dural graft substitutes. The onlay graft technique, possible with Integra DuraGen(R) dural grafts, allows neurosurgeons to conclude operations more efficiently than when using materials that require sutures.

Taken Seriously

"No, it shouldn't be causing that. You are not really feeling that."

I can't begin to tell you how often I hear cries from others suffering brain trauma that report after seeing their doctor that they were ignored, talked over, or told that they were imagining things. The feeling of invalidation, abandonment, and outright confusion is awful. It is ok to be angry when you don't feel heard. Say it in a professional and supportive way. I have a few things that help me to be heard and address concerns when I see my doctor.

1. Write it down. Make and keep a list of questions in a dedicated spot that you will take with you for appointments. Be sure to leave space for answers. This provides clear guidance of what is going on and specific concerns you have as well as the answers from your doctor.
2. Request records. I am always requesting records of the previous notes at my appointments. This allows me to keep my own copies and often doctors do not have things organized from other providers unless they have a concern. I have provided copies to my rehab team as needed and this has helped to ensure clear and professional communication between all members of the team. In a few circumstances I caught how my notes had not been recorded properly, this could have created problems. With my copies it was able to be resolved correctly.
3. Have an advocate. This is a huge emotional experience. My mind does not recall everything well when it comes to appointments and reporting symptoms. Another person, one close to you can stay focused and ensure that needs are addressed. They also provide an additional sounding board if concerns arise.
4. Keep a calendar. Log things such as activity level, foods, and symptoms as needed. If you report severe headaches but are not being taken seriously, log them. No one can argue with a calendar showing that you are having severe headaches three to four times per week. (This was one tip I tracked before that helped them find my tumor to begin with.) Tracking my food intake helped me to identify that sugar and processed foods were increasing my pain levels and bad days, by decreasing those and changing my eating I was able to help reduce my own symptoms.
5. Be approachable. Develop relationships with supportive providers. All doctors have nurses and assistants that they trust and work with. Building positive relationships with these people will help you to be heard and taken seriously. When the team becomes invested in you as a person, your case will receive the attention it needs. They are in this field because they want to help, appeal to that. I believe firmly that my neurologist saved my life. I have no problem telling him that. By working with his team, I am also able to get the emotional care I need.

You can be heard. You can stand up for yourself in a kind way. You can provide records of dates and times that your symptoms are problematic. It is possible to do many of these things on your own, if necessary. I still bring someone along sometimes when I need another perspective. I accept that my brain is damaged. My memory is terrible. So, I need help. Look at what you need. You can do this. It is possible.

I Am OK (and that is ok)

More of the same.

There it is, the sameness. Not a lot of huge progress. But, then again I guess huge improvement is not to be expected any more.

Confidence is improving, my audiology appointment was key to understanding my sound sensitivity. It didn't change things, but having answers as to why it happens, helps me cope. Going places, large, loud, or filled with people is exhaustive. It terrifies me. My anxiety reaches sky high levels and my mind overworks in an effort to predict and cope with any changes. Yoga and mindfulness have huge benefits to address the heightened state and help build management tools that I can use to regulate. The extra effort, however, is fatiguing.

My physical dexterity has shown some improvement. The confidence helps me move in my restricted sphere more easily, but my neuroplasticity is not improving. I've pretty much settled. This is it. No surprises. No changes. I have even been able to identify my precursors to brain numbness.

There is an order to the warning signs my mind sends. First is an electrical shock firing in the tissue of the overworked portion of my brain. It's attention getting and will get worse if I do not change things immediately. I begin to lose physical fluidity, I stumble and lose my place spatially. Next is a stuttering or disjointed speech. If not addressed it becomes a point of numbness in which I hear and see things but cannot interpret them. I see shapes and colors but could not describe them later if asked. I tell my husband later that I had "the dumb". In the most literal sense this is completely true. I was dumb. I could not speak. Could not engage. If he takes my hand I can follow him but I cannot answer any questions. At times I have had questions asked at this point and helpless sobbing is often the response. I don't know, anything. I don't know my own name when this happens. I am functioning at a very basic level. I breathe, I blink, my heart beats.

Identifying my pattern of mental shutdown helps as I can estimate times and let my support know when and if I need to reset and re-engage. Sometimes you are helpless to change or prevent things, but I do what I can. That's all any of us can do.

God is good. I continue to feel His love and direction. I Am OK. I can accept that. God bless and keep you.